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The Parkinson's Foundation is here for people with Parkinson's disease and those who love them. Parkinson's disease progresses over time, and so does the role of a care partner. This video will explore the care partner journey and practical tips that can help along the way.
First, it's important to understand Parkinson's disease. Parkinson's disease is a neurodegenerative disorder that primarily affects the dopamine-producing neurons in the brain. Lower dopamine levels often lead to noticeable symptoms.
Parkinson's includes movement symptoms like tremors, slowness of movement, and trouble balancing, and non-movement symptoms such as speech and swallowing issues, mental health issues, and constipation.
Simple routine tasks can become more challenging as Parkinson's progresses. If Parkinson's symptoms begin to significantly affect mobility, memory, or thinking skills, it may be time to consider if it is safe for a loved one to perform certain tasks on their own.
These tips can help make daily life around the home easier for a person with Parkinson's. Relocate frequently used items to a place where they can be readily accessed. Label cabinets to easily identify contents. Substitute Velcro closures for buttons on shirt cuffs, waistbands, and other clothing that is hard to fasten, or look for clothes with an elastic band.
Make mealtime easier with assistive technology, such as weighted utensils or plate guards. Consider seeing an occupational therapist who can provide personalized evaluations and recommendations to help people with Parkinson's address their specific needs and concerns.
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There are a lot of day-to-day tasks and responsibilities that are necessary when caring for a loved one with Parkinson's, but it is never too soon to begin planning for the future. Caring for someone with PD often means keeping track of medical records, medical and family contact lists, financial documents, and other critical information.
Consider creating a binder with the following main document categories: one, medical; two, family; three, property; and four, finance.
Whether caring for someone recently diagnosed, adapting to new challenges of PD progression, or living with the disease for a long time, a strong support network is essential for the well-being of both care partners and people with Parkinson's.
Care partners must take care of themselves to help create a productive partnership that minimizes stress and conflict. No one can be a good caregiver without taking care of themselves. Regular breaks are an essential part of a care partner's self-care.
When a care partner does not attend to their own needs or take time off from the caregiving role, they may find themselves experiencing caregiver burnout. Caregiver burnout is a state of physical, emotional, and mental exhaustion that may include a change in attitude, from positive and caring to negative and unconcerned.
If you feel overwhelmed and checked out, you are likely experiencing caregiver burnout. In this state, a caregiver is unable to give their loved one the emotional or physical support they need.
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Caregiver burnout symptoms can include extreme fatigue unrelated to sleep, unusual frustration and anger, feeling cloudy or foggy, and other symptoms that manifest as a result of emotional stress.
Many PD doctors do not ask care partners if they are experiencing symptoms of burnout, but care partners should let them know they might be experiencing burnout and ask for suggestions. Sometimes care partners may receive a referral to their own health professional.
There are caregiver support groups that may help along the journey. In addition to providing a comfortable environment for asking questions and sharing experiences, support groups can lead to lasting friendships. Some groups are for care partners only, while others are a mix of care partners and people with Parkinson's.
You are not alone as a care partner. Our free Helpline can provide more Parkinson's care tips at 1-800-4PD-INFO or Helpline@Parkinson.org.
Learn more at Parkinson.org/CarePartners.